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Patient conference


briarrose
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I would love to put a face to the names and meet some of you guys.

Does anyone know if there is going to be a conference this year or not? I emailed the NDRF and am waiting for a response. I fear it's getting too late if they are planning on it. Aren't they supposed to be every other year?

Steph

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The answer is no. Please see the following post on NDRF from this past January:

http://216.149.163.247/ubb/Forum1/HTML/005123.html

Nina

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I think your videos are from the first conference. As I recall, there were no videos from the last conference, which was in ...hmmm...I think 2002. I think the first conference was in 2000.

Nina

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Guest tearose

Steph, I wish I had known about the past conferences. Why couldn't we do a patient conference anyway? Maybe we are all too tired to think about a big conference but how about a mini-conference? Are you interested in brainstorming the idea? I am willing to consider the idea. tearose

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Conferences cost $$$, that's the bottom line. We've just gotten the funding to fully pay for this board for this year. As far as other expenses, we're much younger than the NDRF and not as well established in that regard. Not that it's out of the question, but it's not in the immediate future.

I worked for many years for a not-for-profit that put on a HUGE annual conference. Our first one was when the organization was nearly 15 years old already. Now they put on one of the biggest Autism conferences in the world. If we are, at DINET, to plan for such a thing, that usually starts AT LEAST a full year before the actual event.

I will pass your interest on to Michelle and ask about what plans, if any, she has in this regard. B) Nina

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I'd love to do it, but most days I am stressing over just paying for supplies, the website & forum. I really want to publish educational brochures written by a physician for physicians, but don't even have the money to do that.

B) I have a great doctor who has POTS that is a medical advisor for us. He would be great to ask for help with brochures because he knows this stuff first-hand. I think physician education is of utmost importance. Anyhow, that is where I am going to put any extra money we have now...but unfortunately right now we don't even have the money for printing/mailing brochures. A conference would be wonderful and is something I have thought about for the furture. Maybe some day!

Michelle

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Michelle--would it feel too weird to make a plea for a specific amount of money to accomplish a specific task? Maybe people would be more likely to make donations if they knew how the money would be used and that it was going to accomplish a certain goal. For example, if you knew it would cost, say, $3,000 bucks (I'm makng this up B) ) to write and print a brochure, you could post a plea on this site and on NDRF ... You might see money flow in! It's just something to think about; I'm not in the fundraising field, but maybe could ask around.

Take care,

Merrill

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Can we apply for grants anywhere to get the brochures printed? Maybe people that surf the web on a regular basis can look for some grant/hand out money.

I hope that everyone belongs to IGive to help support Dinet.

Maybe get a printing service to give a discount or get the brochures printed at any schools that might provide that service. Hospitals have their own print shops, maybe we can approach them and see if they would be willing to do outside work.

Nina thank you for offering your website to add pictures, Cool!

You guys do great work and I love this website, it's user friendly and the fact that you guys are active in the board make it 110% fantastic!

Thank you so much for all of your hard work, time and dedication.

Sincerely

Steph

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Michelle has been working with on a financial plan with a group that helps nonprofits. Yes, grants are an option and are definitely something I know she's mentioned going after in the past. In applying for a grant, one must produce a proposal for exactly what the money will be used for, how it will help people both directly and indirectly. DINET is a very young work in progress...but I know Michelle's got some great ideas and is working toward making this a finacially stable nonprofit that is able to provide valuable services to all of us--both through a direct means like this board and indirect by providing training for doctors so that eventually, we wont have as many horror stories about finding an accurate diagnosis.

Thanks too for the positive feedback. Most of what is available should be credited directly to Michelle--she's the one who started everything and still actively coordinates each piece. An amazing endeavor.

Nina B)

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Thanks Nina. You definitely deserve credit, too. You have been so helpful here on the forum and by answering emails. Your help is greatly appreciated.

Thanks for all of the suggestions. There is so much I'd like to do to make the world better for all of us....sometimes I get frustrated that I can't do it overnight, or by myself for that matter. But I know most of you want to see things get better for patients as well. Together we can make change the world for dysautonomia patients. It can be done, but only if we do it together.

Michelle

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BTW, we do have a place on DINET for pictures with our mascot, Bernie. If you haven't seen him, check him out: (he's really cute)

http://www.dinet.org/mascot.htm

He was donated to us by June Elaine Vogel to help raise money to fight dysautonomia. We'd love to have some of your pictures with Bernie!

Michelle

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Guest tearose

Briar, I still wish we could get together! Why don't the large group of Ohio people have a picnic and invite Bernie and the forum to join you if they can... and call it a potluck picnic!

Just wishing...tearose

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We could have a pot luck...or even meet at a restaurant and let someone else do the cooking. :angry: (You might not want to eat my cooking...it can be scary <_< ) Let me know if any of you out there would want to get together around the Michigan/Ohio area. I'd love to meet you guys!

Michelle

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Guest Julia

I'm in! I would love to meet with some Ohio/Michigan people for a picnic or dinner somewhere. Let me know what I can do to help! By the way---the Mascot is the cutest!

Julie :0)

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I would love to meet you guys!

I probably won't be back to Toledo until October when I see Dr. Grubb. Although if I can swing it, I would like to take the kids back to Ohio this summer to see family.

So if I don't make it until October can we plan a get together then?

Steph

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Guest tearose

Welll, now I'm seeing this actually happening! Steph, do you want to do a poll to see if Ohio is a central enough place and also time of year suggestion? Are you far from Ohio? I only suggeted Ohio because I got a feeling from the forum that many were. I'll be traveling from the east coast so Ohio is about 11 hrs by car. If you need something closer to your home then suggest it, we are still in the information gathering stage so suggest away! I think a potluck is fun but probably not practical because of the distance many will be going. I like the idea of a hotel like setting where we can just focus on visiting with each other and someone else can deal with the "buffet". This is also an opportunity to invite someone like Dr. Goldstein from NIH to speak since he reallly enjoys the chance and will not charge for speaking...that may move the event to somewhere near him in Maryland...

what are you all thinking? With smiles, tearose

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Steph, I'm about an hour from Dr. Grubb's office. I know a few of us that live in this area that would probably like to get together...we've done it in the past. Just let us know when you are in the area. That goes for any others of you out there too.

Michelle

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Funny thing, I lost my card and didn't write it on my calendar book. I just got off the phone with Dr. Grubb's office and they said they had just cancelled my October appt because Dr. Grubb is going to be gone and they had just sent me a notification card saying that. I asked if I could reschedule and I would take any holes they might have. So it looks like I'll be in Toledo seeing Grubb on August 10th. I will probably bringing my kids to this appt so they can meet some of our Ohio family too. Maybe we can plan a POTS picnic?

Steph

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